Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers

• Published in: The journal of spinal cord medicine 2024, Vol.ahead-of-print (ahead-of-print), p.1-13
• Main Authors: Ríos-León, Marta, Onal, Bashak, Arango-Lasprilla, Juan Carlos, Augutis, Marika, Civicos-Sanchez, Nora, Graham, Allison, Kelly, Erin Hayes, López-Dolado, Elisa, Scheel-Sailer, Anke, Subiñas-Medina, Patricia, Taylor, Julian
• Format: Article
• Language: English
• Subjects: Activities of Daily Living; Adolescent; Adult; Caregivers; Child; Cross-Sectional Studies; Humans; Life and health priorities; Medicin och hälsovetenskap; Paraplegia - rehabilitation; Rehabilitation; Spinal cord injuries; Spinal Cord Injuries - rehabilitation; Young Adult
• ISSN: 1079-0268; 2045-7723; 2045-7723
• DOI: 10.1080/10790268.2022.2087140

No information is available regarding priorities for pediatric-onset spinal cord injury (SCI). This study described the Health and Life (H&L) domain priorities of youth with pediatric-onset SCI and their parents/caregivers living in Spain. A cross-sectional survey. Two SCI rehabilitation centers. Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34). Not applicable. Median overall priorities calculated on the basis of importance, unhappiness, and research measured with a new survey of pediatric H&L domains and rated using a 5-point Likert Scale. A total of 60 surveys were received providing information on 35 individuals with SCI: 2-7-year-olds (25.7%), 8-12-year-olds (22.9%), 13-17-year-olds (31.4%), and 18-25-year-olds (20.0%). The top three overall H&L priorities reported by parents/caregivers of 2-12-year-olds were "parenthood expectations" (84%), "leg/foot movement" (83%), and "bladder" function (83%), compared to "dressing/undressing" (78%), "walking/ability to move" (77%) and "bladder" function (77%) rated for 13-25-year-olds. "Sit-to-stand" (79%), "leg/foot movement" (78%) and "arm/hand movement" (77%) were reported as priorities by 13-25-year-olds. The 13-25-year-olds highlighted "sit-to-stand" (100%), "eating/drinking" (54%), and "physical function" (94%) as their top unhappiness, importance, and research priorities, respectively. Significant differences between tetraplegia and paraplegia were found in "mobility in the community" (unhappiness item) for 13-25-years-old. Health domains were considered the top overall H&L priorities by parents/caregivers of 13-25-year-olds, compared to life domains reported for their 2-12-year-olds. This survey will aid rehabilitation professionals to engage stakeholders to implement a comprehensive SCI management program for the pediatric population.